Out-of-pocket expenditures and care time for children with Down Syndrome: A single-hospital study in Mexico City

Abstract

AimTo examine the burden of out-of-pocket household expenditures and time spent on care by families responsible for children with Down Syndrome (DS).MethodsA cross-sectional analysis was performed after surveying families of children with DS. The children all received medical care at the Hospital Infantil de México Federico Gomez (HIMFG), a National Institute of Health. Data were collected on out-of-pocket household expenditures for the medical care of these children. The percentage of such expenditure was calculated in relation to available household expenditure (after subtracting the cost of food/housing), and the percentage of households with catastrophic expenditure. Finally, the time spent on the care of the child was assessed.ResultsThe socioeconomic analysis showed that 67% of the households with children with DS who received medical care in the HIMFG were within the lower four deciles (I-IV) of expenses, indicating a limited ability to pay for medical services. Yearly out-of-pocket expenditures for a child with DS represented 27% of the available household expenditure, which is equivalent to $464 for the United States dollars (USD). On average, 33% of families with DS children had catastrophic expenses, and 46% of the families had to borrow money to pay for medical expenses. The percentage of catastrophic expenditure was greater for a household with children aged five or older compared with households with younger children. The regression analysis revealed that the age of the child is the most significant factor determining the time spent on care.ConclusionsSome Mexican families of children with DS incur substantial out-of-pocket expenditures, which constitute an economic burden for families of children who received medical care at the HIMFG.

The Economic Costs of Childhood Disability: A Literature Review

“…In developing countries, much of the burden is on the household in the form of OOP expenditures and lost productivity. In Mexico, Martınez-Valverde et al found that 33% of families with DS children had catastrophic expenses and 46% of the families had to borrow money to pay for medical expenses [ 48 ].…”

Non-invasive prenatal testing: Special interest groups vs women’s autonomy

“…This is not true; many disability advocates who have critiqued prenatal testing have supported the right to abortion (4)(5)(6)(7)(8)(9). We reject the notion that disability advocates are wholly trying to limit or block access to safe and affordable abortion, acknowledging that disability rights arguments have, at times, been co-opted by conservative anti-abortion positions as noted by Swaim (10). We suggest that instead of understanding disability advocacy groups as "special interest groups" infringing upon reproductive decision-making, disability bioethics arguments may re-frame…”

“…• The Mexican study (10), while stating that the number of births with DS had dropped significantly (from 11.5-15.5 in 2007 to 3.7-4.6 per 10,000 a year later), focused primarily on the heavy burden of supporting a child with DS in Mexico, where costs are not covered by the general health and social services after the child reaches the age of five. It was estimated that the annual expenditure for a child with DS accounted for 27 % of the available household income.…”

“…The cost varies but is usually considerably higher than the lowest prices charged by reputable labs as judged by surveying the Internet. Nevertheless, in comparison to the lifelong cost of raising a severely disabled child, it is a trivial amount, as illustrated by the South Korean, Mexican, and American studies (9)(10)(11). This author can't help but reflect that if NIPT was a test for prostate cancer, it would have swept PSA from the stage long ago.…”

“…In many countries around the world, there is very little support from the public purse for these children, so the cost is born by the family. Here I review 12 recent studies that directly or indirectly address attitudes of pregnant couples to NIPT (8)(9)(10)(11)(12)(13)(14)(15)(16)(17)21), only two of which (8,14) are theoretical discussions.…”